Tuesday, May 20, 2014

Reflections on Kendall’s Kindergarten Year

“You will look back on therapies, appointments, sleepless nights, tears, triumphs, milestones, equipment, ignorance, struggle, strength, and you’ll say with certainty… IT WAS ABSOULTELY WORTH IT!”  -A Very Special Needs Resource

 So once again, life has taken over.  Since my last blog post, a lot has changed.  I quit my job as a Vision Teacher in the Dallas ISD. There are a number of reasons why, but the main one is that I was spread too thin and emotionally drained.  I don’t regret going back to school in the years I stayed home with Kendall.  I certainly learned a lot that will help support Kendall’s education.  I will continue to pay it forward and help other moms navigate the system and advocate for their own children.  And, as luck would have it, I was able to go back to work for the company I worked for when Kendall was born.  (A job I never would have thought about leaving if Kendall had been a “typically developing” childJ ) So it all worked out.  I’m able to get my children up, dressed, and fed each morning, and see them out the door.  I also have more flexibility for the plethora of appointments and school meetings raising Kendall requires. 
Kendall  turned six a few weeks ago.  SIX.  I can’t believe how quickly time goes by.  This year of her life was filled with many firsts, and I attribute that to her great success in school.  From walking with a gait trainer, moving her power chair independently for extended periods of time,   coloring and holding pencils and crayons, brushing her own teeth and hair, to sleeping in her own bed and being self-motivated to use her communication device, this year has surpassed my expectations tremendously.   A few years ago, all of these things seemed like pipe dreams.  Back then, we just tried to get through some of those very long days without hours of crying fits and rages!  Kendall still has a number of challenging behaviors at home, don’t get me wrong, but she is growing up.

This school year couldn’t have gone better.  We have been so supported at our HOME CAMPUS!  Kendall was truly educated side by side with her non-disabled peers the maximum amount of time possible!  She only left for Resource classes twice during the day (and only for 30 minutes)  She had  teachers  that made certain Kendall was included, and also welcomed her nurses and support staff into the classroom. Our district did an amazing job ensuring that her IEP was honored and that it was as natural as possible.  The level of professionalism this year by her team and the administrators was remarkable. 

We added a Behavior Specialist to the mix.  She created a “token economy” behavior system for Kendall and made a video that gives step by step ways to positively encourage Kendall to show us what she knows!  This video is easily passed on to those who work with her.

Although IEP time makes me stress a little, this year was much better than the past.  I feel like the Diagnostician, Assistant Principal, teachers, and related services really listened to my concerns and shared in our family’s vision for Kendall.  I’m confident this next year of progress monitoring will be better and make more sense, since we have more of a concrete plan written in to her IEP.  I'm also extremely excited about the focus on literacy in first grade!  I have no doubt next year I will be able to say she is a reader!!

We are finally on the right path with the communication device.  Her speech pathologist at school has gone above and beyond to learn the ins and outs of the selected device, and also is training others how to use it.  Kendall’s IEP requires her to use it three times in each class.  I sleep better at night knowing that this is progress for her and a means to her independence and ending communication frustrations for her.  We are going to do our best to continue that at home throughout the summer. 

We have faced a lot of decisions regarding Kendall’s health this year.  Tonsils and hip surgery are inevitable, but I’m still in denial about both.  Kendall’s eyes are finally healing from the 5 surgeries this year…and we finally will have a three month break from eye exams under anesthesia.  But despite  all the absences Kendall had this year, she still did amazing!

This life of ours is not always easy.  I still have my moments of anger and hostility toward the universe for how hard things can be for Kendall Ann.  But overall, we seem to be plugging along!  There isn’t a day that goes by where I don’t count my blessings for our loving and supportive family and friends, our nurses, and school staff.  Life is a precious gift, and I cherish every day of it!

 



 

 

10 comments:

Heather said...

Hi Jocalyn! My name is Heather and I have a question about your blog that I hoping you would be able to answer! My email is Lifesabanquet1(at)gmail(dot)com :-)

Deirdre said...

Hi Jocalyn,

I found your site when earching for help with dystonia.
I would be very grateful if you could answer a few questions regarding dystonia and Ketogenic diet. My nephew has some complex health issues, seizures from 6 weeks old, dystonia, developmental delays. The dystonia in particular causes a lot of distress with many painful spasms, waking at night etc. From my research it seems like a ketogenic diet may help (and obviously might help with the seizures -
they are mostly controlled with drugs). My questions are:
did Ketogenic diet help the dystonia? Is there a drug that helped the dystonia? Did the ketogenic diet help your daughter's development? My nephew is 4 but makes very slow developmental progress.
My email is deirdre.breheny@gmail.com
I would be grateful if you have time to respond! Thanks Deirdre

ryu | How to get rid of timeshare said...

my best rewards to everyone !

karen said...
This comment has been removed by the author.
Shelley Michele said...

I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

karen said...

I am Karen from Canada, I once suffered from cervical dystonia,for more than 30 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had jerky head movements and muscles contract ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Jessica on how her daughter was been cured from cervical dystonia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again for more information you can email him on drwilliams098675@gmail.com for help

Sophie Lewis said...

As a sign of gratitude for how my son was saved from dystonia , i decided to reach out to those still suffering from this.
My son suffered dystonia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from dystonia and so many other with similar body problem, and they left the contact of the doctor who had the herbal cure to dystonia . I never imagined dystonia has a cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months he was fully okay even up till this moment he is so full of life. dystonia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

JESSICA said...

ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

Leonardo DiCaprio said...

I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on blog-site so many people suffering from different kind of disease including dystonia thanking him about his good work. I also have dystonia. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my dystonia status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for me,after taking Dr Williams medicine i was completely free from cervical dystonia within one month of usage, I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help

Sophie Lewis said...

As a sign of gratitude for how my son was saved from dystonia , i decided to reach out to those still suffering from this.
My son suffered dystonia  and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from dystonia  and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to  dystonia  . I never imagined  dystonia has a cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months he was fully okay even up till this moment he is so full of life. dystonia  has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .